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Tuesday, December 30, 2008

ROHHAD and NEUROBLASTOMA Update on Haven

Currently - I just wanted to update everyone on what we're doing and what we're waiting for.

Through the holiday break we have slowly been decreasing Haven's dose of steroids and will end on January 1st. On January 2nd at 8:00 am we will have blood taken at JH to check Haven's Cortisol levels. I am hoping she is producing Coritsol on her own and we won't need the steroids.

January 13th - Haven will go in for Chemo and meet with her doctor to discuss the future treatment plans. We are waiting to hear if we will go back on Rituximub (chemo) for another 6 months.

January 15th - Meet with Pulmonology at 8:30am to evaluate Haven's breathing - really I don't know what they do. This will be the first time we've seen Pulmonology since our initial 10 day hospital stay in October 2007.

Setting up an appointment with Audiology - WHY? Josh lost his hearing after being diagnosed with ROHHAD. So since we know very little about this syndrome we are getting an initial marker on Haven's hearing and will be able to watch if it starts to decline.

Still waiting from Haven's eye doctor - I've called 3 times and haven't heard back. I'll call again after the holidays. Now that she is going to be getting more chemo I'm not sure if it's the right time for surgery. Haven's doctors will have to tell me on Friday.

Christmas photos are coming! I have so many projects in the works right now I barely have time to do anything!

OH - had some CRAZY doctor dreams over the break. I remember one very clearly.-- Haven was in a lab room (all white of course) with lots of doctors. They frantically tell me that Haven now has Hypoxia. I was upset (although when I woke up I didn't know why) and I kept asking them how do they know. They kept telling me "it's on the list". I was crazily searching for the list and they had it on the white board and were check marking Haven's symptoms - just going down the list. They kept telling me to look at the list over and over. --

I woke up and searched for my list. Hypoxia is NOT on the list. I was't even sure if it was a word or medical term. BUT it is!

HYPOXIA: is a pathological condition in which the body as a whole (generalized hypoxia) or region of the body (tissue hypoxia) is deprived of adequate oxygen supply.